After several weeks of waiting, I finally received the two brown envelopes through the letterbox which told me how I’d done with my enforced PIP (Personal Independence Payment) application and my ESA (Employment Support Allowance) reassessment and I was successful for both Benefits.

And, further to that, a very good family friend also received her brown envelope for PIP on Sarurday as well and she’s been successful as too. Virtual High Fives all over our social media pages let me tell you – we were delerious. We both got to sleep properly for the first time in quite a while that night and we can now both breathe freely once more because we know that our finances are guaranteed for at least the next few years at any rate.

Brilliant!

But, there is something we both want to know. Why is it that the maximum award we could receive was for ten years and then we will both need to go through the full assessment procedure once again.

Why?

Why just ten years?

I have MS. I am unable to walk, work or care for myself at all, I am a wheelchair user, I cannot dress myself, wash or bathe myself, prepare my own meals or feed myself without help. I have a catheter and I spend the majority of my time stuck in bed, and I am not going to get any better. I can only ever stay the same or, as is more likely, get worse. My friend has a visual impairment. She cannot see to look after herself or her child. She also needs help with so many things on a day-to-day basis. And, guess what, she will never recover either. Just like me she will stay the same or get worse for the rest of her life. There is no magic bullet that can cure either of us. And, for both of us, this is for always. This is for ever. Our impairments are degenerative and incurable. And, thanks to our impairments, neither of us are to ever be able to work and support ourselves, however much the Government would like us too.

But, here’s the thing. Both of us have been transferred to PIP from the old Benefit, Disability Living Allowance (DLA), where we both had life-time awards. Now we are in receipt of PIP, we don’t. The old Benefit understood that neither of us would improve – ever – so we were given awards that recognised this fact. Under DLA we both recieved awards that meant we would not be pestered, made to fill in intrusive and invasive forms the size of a small novel, questioned, examined, prodded, poked and assessed as if we were making it up and were lying about the difficulties we had in our everyday lives because of our impairments. Thanks to the transfer to PIP, we will now have to go through this all over again in ten years time. And, if we survive that, ten years further on from there too. And we’re not the only people to experience this. Other people with incurable, lifelong conditions are getting the same result. Ten years is the max.

Do the boffins at the DWP know something we don’t know? Is there a cure for MS, for blindness, for so many other impairments just round the corner?

All this ten year thing will do is cause worry, stress and countless sleepless nights for disabled people and their families and cost the Tax-payer millions. People with incurable impairments will need to be sent forms to complete that have to be printed and posted at a considerable cost to the State. People with incurable impairments will need to undergo unnecessary assessments, undertaken by paid assessors at home or at disability testing centres at a considerable cost to the State. People with incurable impairments will need to be sent letters and copies of their assessment reports telling them they have been re-awarded their Benefits that have to be printed and posted, at a considerable cost to the State. It does not make sense.

What’s wrong with having a Life-time Award for disabled people with incurable life-long, degenerative impairments? An award that recognises that there are some disabled people who will never get better and will always need help. If people are already getting the maximum award they can get and can’t improve, what’s the point in checking to make sure that they still can’t do the things they couldn’t do ten years earlier? If there is no more money available, if the award cannot go up, if things can’t change what’s the point? People who are not going to get better don’t need to be reminded of this fact every ten years.

Once someone has been assessed, if they have been awarded the maximum available and there is no chance of anything changing apart from things getting worse then just leave it alone. Stop the endless form-filling, stop the endless prodding, poking and assessing, stop the printing and posting, stop the endless stream of brown envelopes, stop the stress, stop the worry. It benefits no-one, it saves nothing and it’s all done at considerable cost to the Taxpayer.

Brief bit of background info – I am currently in the process of being transferred from the Disability Living Allowance I have been receiving since 1998 onto the new Personal Independence Payment. Around six weeks ago a kind and long-suffering friend helped me complete the frighteningly lengthy claim form, in excruciating detail, which I then returned, complete with copies of my Social Services and District Nurses Care Plans as evidence that I was not tell lies or over-egging the situation and my needs.

Well, yesterday I received a letter saying they were coming to see me to do a home visit and check that I really am as disabled as I said that I am and that I am really in need the help I say that I do.

Great!

No real problem with a personal visit and assessment except for the fact that it will be a colossal waste of both their, and my time.

First of all the appointment is for 9am-11am. Well, that’s not convenient. My carers come at 9.30am to wake me up, wash me down, attend to all my personal care needs, get me ready for the day and provide me with my breakfast. The assessor will just have to wait in the kitchen whilst I get my full body wash, have my catheter bag emptied and my incontinence pad changed. I’m not having them in my room to watch any of that.

Secondly, my carers are here for around an hour for my morning visit, and can’t change their times as the have several other clients to see, so the assessor really will have to wait in the kitchen until they have finished everything they have to do.

Thirdly, in order to ensure that the assessors don’t, themselves, lie in their report ,about what they ask me and what I say to them (there are too many reports of this happening with other disabled people for me to take the risk), I will be recording the whole thing. The DWP allow this, if you inform them in advance that this is what will be happening, but it needs to be recorded on a double cassette or CD recorder so that I can keep one one copy and that they can take the other with them. No digital recording on a computer, tablet or laptop, no dictaphones, nothing modern, just an old fashioned cassette or cd recorder. Now, how many people still have one of those?

Not me.

Why am I going to have to go through this indignity yet again anyway? I fully understand the need to ensure that Welfare Benefits are going to the people that are actually entitled to them and need them. But really. Can’t the people at ATOS Healthcare read? I sent copies of my Care Plans for a reason – as proof that I am genuinely disabled. Are my Social Worker and my District Nurses really going to spend time detailing all the help I need if I didn’t actually need it? Is my Local Authority really going to be spending an inordinate amount for carers to come in to do everything for me on a daily basis or no reason? Somehow, I don’t think so.

The pen-pushing jobs-worths in the DWP need to learn to read and start employing some common sense, if, of course, they know what common-sense is. Disabled people, with genuine, documentary evidence of their impairments and the help they need just to exist, should not be hounded, day after day, to prove every little thing, in front of witnesses. It’s not right and it should not be happening. I am an emotionally strong woman but, even I am beginning to feel dispirited and depressed by the constant badgering. For other people all this disbelief and hounding and assessing and justifying themselves can be, and often is, the straw that broke the camel’s back.

Employ some sense DWP, I beg you. If you ask us to send you medical evidence which proves our claims when we make them, do us the courtesy of actually reading the evidence we send you. You are looking for fraudulent claims so you can stop spending the taxpayer’s money on claims made by people who are not entitled to Welfare Benefits, so stop wasting our money going after people who really should and need to be getting that help and can prove it. What is this country coming to?

As I’ve said before, only this week, would you please just leave me alone. I, and so many other disabled people, have had enough. Learn to read and start checking the evidence you ask us to provide. Doctors and Consultants, social workers, District Nurses, Medical Professionals, don’t write these reports for their own amusement, they write them for a reason. Do them, and us, the courtesy of reading what these reports say and then start going after the reall fraudsters instead of us.

I have received yet another lengthy form from them which I have to read, complete and return, by the beginning of April.

This time it’s for a ‘Capability for Work Assessment’.

Its not the first Government form I have had to complete recently either. I had to deal with a Personal Independence Payment (PIP) form only last month after they decided that I, alongside many, many other disabled people, needed to be transferred from the Disability Living Allowance (DLA), which I have been receiving since 1998, to the new PIP Benefit instead. It’s not even as if completing either of these forms will give me any more money, the amounts will remain at exactly the same, pitifully small, levels. We never get any type of pay rise whatsoever.

And, as far as my impairment is concerned anyway, there has been no miracle cure either. No improvement, no divine intervention and no miracle medical advance in the past quarter of a century. My Multiple Sclerosis hasn’t got any better during the intervening years between diagnosis and now, it has only got worse. Thirty years on and it has only ever deteriorated.

But, despite this lack of movement, I still have to go through the form filling merry-go-round all over again.

What a complete waste of my time, their time, my ink, their ink, reams of their paper and their postage.

It’s not as if they’re short forms either. They expect me to write a novel, citing chapter and verse, excruciating detail after excruciating detail, about my condition and how it affects me on a day to day basis for every single question and there are an awful lot of questions. The new form is twenty-three pages long, the PIP form was much longer. I even have to give full contact details for my GP, my specialist nurse and my Consultant so they can all be sent a form to complete too where they will be asked to confirm that I’m not lying, exaggerating my condition or trying to cheat the system.

I realise and fully acknowledge that the Government needs to make sure that the Taxpayer’s money is spent properly and wisely and that the people who are in receipt of Welfare Benefits are actually entitled to the money they are claiming but, for a disabled person diagnosed with a well-known and well-documented, degenerative condition which is never going to improve, however much the DWP, and I would like it, is, in my opinion, pointless.

I am now restricted to my bed most of the time, only able to get up for, at most, one day at a time from 10am until 8pm and then needing 3 or 4 days recovery in bed afterwards before I can do it again. I cannot get out of bed or dress myself without help from two trained carers. I need to be washed and dressed by someone and then hoisted from my bed and put into my wheelchair for the short periods when I do get up.

Exactly how many times and in how many ways do I have to tell the DWP that I cannot walk, cannot stand, cannot move from one chair to another unaided, am doubly incontinent, have a catheter, and have to use an electric wheelchair. I cannot write with a pen or pencil, lift a carton containing a pint of liquid, put something in my top pocket, fold a letter and put it into an envelope or even move an empty box without help.

Why can’t they just leave those of us with a life-long, incurable, degenerative impairment, such as MS, alone, once we’ve told them about our condition and the affect it has upon us. Do they think we need to be continually reminded of the effects of our conditions? No matter how many times they ask, and regardless of the never-ending avalanche of paper they keep sending me, when will they realise I am not going to get better and that having to complete form after form is not going to help.

I would dearly love to be able to get up and go out to work but it’s not going to happen. All these endless forms do is make me feel depressed and distressed thanks to being constantly badgered and reminded what I can no longer do and what I am unlikely to ever be able to do again. They don’t ‘incentivise’ me at all so stop trying. Read my responses on both this, and the previous form you sent to me, make a note of them and then employ a little bit of common sense before you try asking me again. I’m stuck with this disease until the day I die and I don’t need you to keep reminding me. I am well aware of that fact without your havy-handed and insensative intervention.

I have only one further thing I want to say to you on this subject and I would be grateful if you listened for once.

Yesterday, as I usually do, I switched over to my daily dose of ‘Daily Politics’ on BBC2 at lunchtime and saw something that made me fume.

The programme started off with it’s usual collection of serious stories such as John Major’s speech about leaving the EU, rebels in the House of Lords and a variety of other Brexit related topics but, at the end of the program, and probably as a form of light relief, they showed the annual Parliamentary pancake race. MPs and Lords -v- journalists, ‘sprinting’ round a marked course, in the pretty little park by the Thames, whilst trying to toss cold and inedible pancakes.

Nothing of national importance, just a bit of fun.

Well, it was until they did an interview with one of the winning team of politicians. And it was that which made me fume as I munched my midday meal. My anger was directed towards one of the successful team of Tory MPs.

I can’t remember his name but, what he said, infuriated me.

When the presenter asked him why he had taken part in the race, the MP laughed and said that it was just a bit of fun but, it had a serious side too and helped raise money for charity. He was then asked which charity and he said ‘Rehab’.

Now, it’s not the Charity I have a problem with. Rehab do great work and, like so many other charities, needs whatever money it can get. That’s not it, that was not the problem. No, it’s what this politician said next that made me so angry. He gave a little laugh and then said “It’s a bit of a laugh and it’s good to be supporting a charity that is looking to help promote independent living for disabled people”.

And that was the point my cage was well and truly rattled.

How dare he say this only a day after ‘Personal Independence Payments’, the most important Welfare Benefit for thousands of disabled people, was cut for new claimants by HIS party. And this isn’t the first cut or major change either, it is just the latest of many. Employment Support Allowance has been severely restricted, Attendance Allowance is under threat. Unfair PIP assessments have lead to disabled people losing their cars or being denied benefits entirely. The Independent Living Fund has been axed. Cuts to the Access to Work scheme are imminent. The financial assaults by this Government on the independence of people who who are sick and disabled, through no fault of their own, has been neverending.

And then we get idiots like this politician almost rubbing it in.

If he really cared about helping disabled people gain independence then maybe he should have done something concrete to actually help and voted against this move instead of just running around a square, flipping pancakes, badly. Maybe he should actually look at the harm his Party’s policies have done. Disabled people have lost so much as a result of the never ending assaults on our hard-fought for allowances and benefits. People have been restricted to their homes because of these cuts. People have lost their jobs because of these cuts. People have lost their vehicles because of these cuts meaning they have lost independent access to local shops, their GP’s surgeries, life-saving hospitals and vital leisure activities. People have lost their homes. People have actually died and he doesn’t even seem to care.

Here’s an idea for you, oh unknown Tory Politician. If you really want to support disabled people and help us gain our independence why don’t you try opposing proposals to cut our support instead of waving it through on the nod. Pancake racing may be fun and result in a great photo-opportunity for you but it actually doesn’t help us. It may raise a bit of cash for charity but cash for our benefits could do so much more for us. Try cutting the cuts and see what that does for our independence, you might be surprised.

Flipping your pancake, running in the park and posing in your shorts and T-shirt on TV won’t really change anything for us but flipping your support for punishing policies and opposing even more cuts just might.

Last week I had one of my regular long chats with my wonderful father and, as it often does, what he said got me thinking. Why don’t more older and disabled people know about all the things they are entitled to from the State and that they deserve to receive? How many lives could be improved and made easier if people just knew what’s out there to help them? Welfare benefits, home helps, aids and appliances, it’s all there and available but people often don’t know about it or don’t realise it applies to them and their own particular circumstances.

My father and my Step-Mother are a case in point. They are now in their 80s and their health is not as good as it once was. They both have trouble walking any distance due to disablin medical conditions and in doing all the things they used to delight in. They have had to slow down and do less than they used to. But, with the right help and support, they can still do what they want, when they want to do it. They can go on leading the happy, enjoyable, fulfilled lives they always have done and, more importantly, be able to continue to do so for many years to come.

A couple of years ago I realised that neither of them knew about one of the main Welfare Benefits they were entitled to and, in my opinion, should have been receiving for several years, namely Attendance Allowance. No-one had ever told them about it, let alone mentioned it, even in passing. Attendance Allowance is a payment made to older people who need a little bit of extra help due to the restrictions placed on them, not only because of their age but also if they have any disabling medical conditions as well. They can, of course, use the money how they want but most people use it to pay for some kind of home care or for aids and adaptations within their homes to make life easier. It’s not a huge amount but it’s regular and it can help. I told my father and Step-mother about this benefit, they both applied and were awarded it. And what a difference it has made for them. My father has been able to buy himself a motorised scooter which has given him the freedom and independence to go out and do what he wants in the small seaside town where he lives. My Step-mother has been able to pay for a cleaner to come in once a fortnight to deal with the more awkward elements of housework that needed doing and that she was no longer able to tackle as easily as she once was. As far as I am concerned, this is exactly what the benefit is for, to give two older people who have worked hard all their lives the freedom and ability to remain in their own home rather than having to consider selling the house they love and have lived in for so many years and moving into sheltered accommodation or a care home.

But why did it take me to tell them about it? If it wasn’t for the fact that I have worked for charities for older and disabled people, giving advice and information on benefits, for many years they might never have found out what they could get. Why didn’t someone else such as their GP or their medical specialists give them the information. People find out about the help they may be able to get despite the system and not because of it.

Today I have seen reports about £12bn in unclaimed benefits. I wonder why. Could it be because people don’t know or understand what they are entitled to? There must be a way of ensuring that more people find out what there is out there for them and giving them the help they may need with applying for those things. Maybe, instead of having work coaches and employment advisers in doctor’s surgeries it would be better and more efficient to have benefits advisers there instead. Professionals who could help patients understand what they could get and, more importantly in my view, assist with the complicated application process. After all, if people were in receipt of the all the help they are entitled to then they may not need to visit their doctor so often and could stay out of hospitals and needing expensive and invasive social care help for longer. It might cost a little more to do this but there would be savings down the line in other areas as a result. Consider the picture as a whole and not the individual elements in isolation. Give people an easy understanding of what they are entitled to, help them apply and get rid of the hurdles stopping people from getting it. It makes sense in the long term.

I am somewhat concerned that disabled people are in the process of shooting themselves in the foot.

Amongst all the comments and posts about David Cameron’s tax affairs and the Panama Papers on social media at present, there are also questions being asked about the fact that the Camerons claimed disability benefits on behalf of their disabled son whilst he was still alive. The argument seems simple – should the Camerons have claimed Disability Living Allowance (DLA) for Ivan given the fact that they are a very wealthy family and had no need for the money or, was the act of claiming this benefit, fraudulent.

Simple question here, how?

The definition of fraud is wrongful or criminal deception intended to result in financial or personal gain. In what way was claiming a benefit, that Ivan was perfectly entitled to receive, wrongful or criminal deception?

It wasn’t. Therefore, in no way, can this be considered to be fraud. There might be some validity in a question being asked about the morality of a wealthy family receiving a welfare benefit but there can be no question at all asked about the legality of the claim. The Camerons were perfectly entitled to receive DLA on behalf of Ivan. He was a disabled child, the families of all disabled children were entitled to claim DLA on their behalf so the Camerons were entitled to the money they received.

I have no issue with that whatsoever.

Moreover, what they did with that money was their business and not ours. Did they spend it on Ivan or did it go straight into the family coffers? We don’t know. It could be argued that the money should have been put aside, into a trust or bank account for Ivan for when he was older, but again, why? We have no right to ask that question. If the Camerons were a poorer family, living on benefits, in social housing, needing to use a foodbank, would we be saying the same thing?

Let’s be honest here. No we wouldn’t..

And that is tthe issue and the nub of my point. The Camerons received DLA on Ivan’s behalf because he was disabled, not because of the amount of money the family did or did not have.

DLA – is a non-means tested benefit which is paid to a disabled person to compensate them, in part, for the extra costs they will experience because of their impairment and, in the case of disabled child, to help the parents with those extra costs. For some people and families it is more necessary to have this money than it is for others but everyone who is disabled is entitled to receive the money. Rich and poor alike.

Asking if David Cameron defrauded the benefits system by claiming DLA for his son is wrong. How could he have defrauded the system if his disabled son was receiving money, that every disabled person is entitled to receive, because of his impairment. We need to be so careful here, it almost sounds like we are asking for DLA and, nowadays, its successor, PIP, to be means tested. If we are asking if it was wrong for the Camerons to have received DLA for Ivan because they are a super-wealthy family, are we also saying that everyone who receives PIP or DLA, but also has income from another source, should not receive anything either? Are we saying that that is wrong too? We need to be very careful we don’t start, however inadvertently, saying that DLA/PIP should be means tested by questioning if David Cameron had a genuine need for Ivan’s DLA. You could argue, effectively, that of course he didn’t, but Ivan was still entitled to that money. If he were still alive, would we all be saying he should not receive DLA because his family is rich? I would hope not, because, if we did say that, we would be arguing in favour of means testing for PIP and I don’t think any of us want that. After all, does a disabled person who receives DLA/PIP, and who also works in a well paid job, have a genuine need for the benefit? Depending on how much they earn they almost certainly have enough for everything they need without any State help whatsoever but why should they? A disabled person does not ask for their impairment so, should they be penalised because of it? Of course not. Yet, by saying that David Cameron was claiming DLA fraudulently on Ivan’s behalf, that is exactly what we are doing.

Whatever else we think of him, his Party and his politics we must not allow this to colour our views by saying one rule for him and another for everyone else. His family’s tax affairs may be questionable in the extreme but there is no doubt that Ivan was a disabled person and that, as such, his family was therefore fully entitled to claim benefits on his behalf. The money received by the Camerons, however distasteful we find it that they got anything at all given their wealth, was not claimed fraudulently and we are only doing ourselves a disservice if we say anything else.

No wonder people in this country believe disabled people are inherently scroungers, receiving money for nothing, when we are greeted by headlines in national newspapers and on the TV, like the ones I have seen today, saying that our welfare benefits are to be cut by £150 per week in next week’s Budget. Benefits that we receive for being sick and disabled. Benefits that are supposed to help put us on a level playing field with our non-disabled fellow citizens. Benefits that we ourselves, or our families, have contributed to by way of taxes and NI contributions. No wonder we are being vilified and thought of as living a pampered life of luxury when we’re not. No wonder we get shouted at and abused in shops and on the streets by people who are also struggling in the gloom of austerity. No wonder when misinformation such as that I have seen and read today are being quoted on Social Media and by the media as being fact.

These figures are not right. They cannot be right. It is mathematically impossible for them to be right. Figures, implying that our benefits can be cut by £150 every week and still leave us with enough to live on, make it sound as if we must receive an absolute fortune but this is far from the truth. Where these figures coming from? I don’t know but they are not right. Don’t get me wrong, I’m not saying that the situation is not dire, it is, but, by giving out incorrect numbers as fact, the public are being led to believe we can afford to absorb the cuts. We can’t. The problem is, as far as I am concerned, that when the real figures for the cuts are given they will have to be lower than £150 per week as we don’t get that much in the first place. It will look like the Government has listened and has toned things down a bit, when they haven’t. They can’t have done. However hard they try to make us believe it, they cannot reduce figures when the number they are starting from is so wildly out of kilter with reality. They look like they are trying to make it appear they have done us a favour. Well it’s not true. They won’t have because they can’t.

Let me show you the problem and try to set the record straight.

As someone who actually receives these benefits, the numbers quoted in the press and on TV didn’t sound quite right to me but I wasn’t going to kick up a fuss without being sure. I needed to know for certain or I would be doing exactly what I was complaining about and saying something that wasn’t true. So I checked and I was right. The numbers quoted are wildly inaccurate and misleading. PIP or Personal Independence Payments and it’s predecessor, DLA or Disability Living Allowance, the benefits they are talking about, are split into two separate payments, one for care and one for mobility. Disabled people are tested against a number of criteria and are then awarded points based on what we can and can’t do, the help we do or don’t need to do those things and what specialist aids and equipment we may or may not need to do those everyday tasks. Current rates are set at weekly figures of £82.30 for care and £57.45 for mobility meaning that the most anyone can get for PIP or DLA, combining the two amounts together, is £139.75 per week, a figure that is £10.25 per week LESS than the amount we are reported to be losing every week thanks to Mr Osborne’s cuts. No wonder people who don’t actually know think we are all coining it in.

Where are these numbers coming from then? Are the press being told the figures by the politicians? Are people not even bothering to check that it makes sense? Are they just blindly believing and printing what they are being told? Don’t they even check for accuracy? That’s what it looks like to me and it’s sloppy, it’s not helpful and it’s wrong. If I, an ordinary citizen with no journalistic training whatsoever, can find accurate information on current benefit rates by typing a simple question into Google,namely ‘What are PIP rates for 2016/2017’ surely even a junior hack could do the same thing. Getting it wrong is not helpful, especially for the people you are trying to help and support, it can even make things worse. Please try to check what you are printing or saying before you print or say it, what is so hard about doing that?